I've now spent two consecutive Memorial Day weekends at Hospital X with intractable vomiting. Last year I checked myself in. This year, I took the scenic route via three weeks of hard time at Hospital A followed by a transfer to Hospital X. When the nurse blindsided me with the transfer order to Hospital X after COB on a Friday night, I assumed it was a clerical error. The plan that'd been laid out by my primary hospitalist team was to transfer me to a hospital which specializes in CVS. When my (new) weekend hospitalist had run by for +/- 90 seconds Friday morning, he'd said I'd be transferred Monday as planned. 

But here I was, 8 hours later, hysterically crying over the prospect of being sent back to the hell which is  Hospital X. I finally got nursing to call the hospitalist so I could plead with him to change the order. I let him know that Hospital X's 'care' is better characterized as psychological and physical torture. I firmly believe I am better off facedown in a ditch, drowning in an inch of muddy water, than under the care of Hospital X. The hospitalist attempted to contain his exasperation while insisting that ditches are a far worse fate than Hospital X and I am lucky he had managed to secure a transfer to a new cyclic vomiting specialist there. I've now been admitted for 8 days at Hospital X and haven't seen anyone from the GI department, let alone a CVS specialist. I have, however, been told by hospital police that they would cuff me and take me to jail for taking photos of them ransacking my belongings following a syncopal episode. This egregious treatment doesn't surprise me - indeed, last month I wrote Hospital X a letter of complaint, copied below, which shared  how their lack humanity has broken my spirit. 

Dear Dr. X-

Thank you for your willingness to contact me, the patient in question, regarding my experience with Hospital X. Apologies for the lapse in time, your email disappeared to the bottom of my inbox whenI was readmitted to Hospital A with a central line infection. My choice to return to the facility which gave me the infection, instead of coming to Hospital X, is a good indication of the disdain with which I hold your hospital with. 

When Dr. Y visited me during a two-week stay in July, I thought Hospital X had hit rock bottom. During this stay my roommate’s bloody vomit sat clogged in the sink for three days before someone came to plunge it. Sanitary conditions pale in comparison to the forced separation from my friend and advocate who is a Medical Student with your facility. While I fully understand the need to keep relationships between students and patients professional to protect patient privacy/health and their education... Over the years my friend has come to know my health likely better than I do... and long ago I legally gave them permission to access my medical information [so any professional/educational distance is null].

However, that isn't the stay which brings me to tears when I answer people asking ‘What is the worst healthcare experience of your life?’ - that honor belongs to the 48 hours I spent housed in an on-call room last November.

November’s stay made me appreciate my cellphone in ways that you should not have to appreciate your phone while inpatient at a hospital. Here my phone wasn’t my connection to the outside world - it was how I connected the dots within. It enabled me to contact five of my physicians, all of whom are attending physicians at your institution, when my resident was unable to do so. When the resident insinuated I had not established care with hematology, I was able to call the hematology department and connect my hematologist to the resident in under 15 minutes. At the time of admission, I had given this resident a typed list of my specialists which included the same contact information I used successfully; as such I find it difficult to believe the resident attempted to verify I was an existing patient.

When the nurses couldn't hear the physical bells my roommate and I were given, I resorted to calling the nursing station on my cellphone (Ironically, courtesy of the speaker in the wall of our on-call room, we heard nurse requests from all the other patients on the floor). My roommate did not have a cellphone and I ended up relaying her requests by calling the nurses station each time my roommate rang her physical bell. As such, I didn't sleep the entire time we were in this closet.

However, these communications issues are simply annoyances in comparison to the emotional torture of a fellow human experiencing unrelenting pain.

My roommate, admitted for a Sickle Cell crisis, cried hysterically for over 12 hours while her pain remained unmanaged. During this time I called and emailed the patient advocate several times on my roommate’s behalf and ‘rang’ the nurse countless times.  Eventually my roommate’s attending came to see her. Unfortunately her physician was “Dr. Feelgood.” I had the misfortune of being this physician’s patient in July. I nicknamed him “Dr. Feelgood” for stopping my pain regimen (developed by a pain specialist) and insisting yoga (contraindicated with my joint condition) would magically fix all my problems. True to form, Dr. Feelgood insisted my roommate's issues related to positive thinking and refused to revert to a pain regimen that had apparently worked before. I’m not a physician and have no idea what pain medications this girl should have been on. But as a human I know that “Tears = Bad” and anyone that cries for twelve hours while begging someone, anyone, to call their physician of record isn't faking it. She didn’t stop crying until a doctor with some humanity sedated her following shift change. The complete disregard for her pain stripped her of her dignity and brought me to tears.

IMG_5401

27 hours in paradise... err... the ER Hallway. With a Pulmonary Embolism.

I’ve experienced many horrible things during my healthcare journey. I have experienced pain – I broke my femur in a remote location and spent hours in transit before receiving pain medication. I have experienced makeshift environments - last September I spent 27 hours in a hallway waiting for a bed to open while being treated for a pulmonary embolism. But this experience of complete powerlessness in the face of another’s pain is, bar none, the most profoundly heartbreaking experience of my life.

During this situation, I contacted the patient advocate several times via email/phone and complained in person post discharge. While I am appreciative of Dr. Y for bringing these issues to your attention and find your immediate response very encouraging, it saddens me that as a simple patient my voice wasn't heard.

Wishing you all the best,

 

Jess Jacobs

Here is their response:

4.16.15Response

Thanks to my forced transfer to this facility, I've found that nothing's improved. I was slated for discharge earlier today, only to be remanded over dangerously offkilter labs caught when the attending went to signoff on my discharge. These electrolyte imbalances did not become dangerous overnight and might have been treated when I passed out earlier this week. But no. Instead they looked for an illicit cause to my syncope, sending police in to toss my room during my post syncopal phase in which I shake. When the police came in I photographed their aggression. The officers immediately threatened to handcuff me and throw me in jail if I didn't delete the photos while they watched. Obviously I acquiesced instead of finding out whether you go to real jail or hospital jail when you get arrested by hospital rent-a-cops. 

Either way, the facility is now unwilling to return my central line supplies. This is a bit of a policy change from when I was admitted - the admitting charge nurse had given back my unlabeled pills with the understanding that I wouldn't take them while admitted. Now I'm being told that, while I have an active prescription from one of their own attendings and can show that I/my insurance paid for these items, the facility will not return the items because my infusion pharmacy didn't label each saline flush, heparin lock, and zofran vial with my name. Additionally, I must petition to have my medical record amended to strike their incorrect suspicion that I illicitly obtained/administered IV morphine to myself while admitted. 

But this was only the beginning of 'Big Brother.' Since I've now passed out twice, I have the pleasure of a Sitter. A Sitter is someone who sits in your room and watches you, presumably so you don't attempt to get out of bed on your own and fall. Previous Sitters have let me know they've found the task of watching me easy/boring/ridiculous since I know who/where I am and play by the posted 'Call! Don't Fall!' rules. This admission is no different. The two falls I've had I called nursing, told them I thought I was about to pass out, and,  fell to the floor despite nursing having their hands on me at the time. 

However, I can't blame the facility for trying to avoid another fall - as previously explained by a friendly CNA: "We'd rather have you die than fall. There's less paperwork." But with less paperwork comes unintended consequences for the patient - both physical and emotional. Physically I'm losing muscle mass and stability as my only exercise is the 8 or so feet between my bed and the toilet. Otherwise I'm stuck in an alarmed bed 24/7 which is so sensitive, it goes off if I roll over incorrectly. 

Emotionally, well, there's a loss of dignity that comes with someone watching you pee or, perhaps worse, visit with friends and family. Of course, this isn't an ever vigilant eye, that would require a living wage or technology implementation. Since we're on the 1980's technology/(presumably) minimum wage package, sometimes the Sitter is asleep.  Or visiting loudly with other employees passing in the hall at 4AM. Or singing a little song at 2AM. Or decides to snack on foods that makes you queasy. (Side Note: Mine's currently sitting 5 feet away eating bacon. She's also 8 months pregnant so I really hope I don't fall on her watch. This is a workers comp lawsuit just waiting to happen.)

When I told the charge nurse the Sitter singing/talking/eating at all hours was becoming the last straw, the Sitter took it personally. I tried to reassure her that she wasn't the only reason I hadn't slept in days. No, her disregard is just one of many items on the list - 3AM blood draws, 5AM vitals, 7AM physician visits - disrupting the painsomnia and nausea that have become all-encompassing since switching to oral meds. Why is Hospital X so committed to the oral med  'attempt/vomit/repeat' plan? Because the second I can hold something down, they can discharge. Not exactly the holistic care experience advertised on the website.

While I hate to say it, it seems my emotionally-charged-knee-jerk "I would be better off in a ditch than at Hospital X!" prophecy rings true. And, while my brain isn't quite working (indeed, much of this post was written prior to my semi-forced admission back to Hospital X), eventually it will return and I'll report Hospital X to the various licensing/quality bodies for the absurdity.

The sad thing is... I know my experience is not unique within the community of patients suffering from chronic disease. Everyday patients are harmed by the one-size fits all approach to medicine which makes no room for those with ill-defined syndromes and default to patient blaming. And these real problems can't be solved with hospital wide technology updates or private rooms. While there's a huge focus on prevention and population health (as there should be), we need to be careful we don't forget the 1% of unicorns who make up 20% of healthcare spending. And, while there's obviously no easy answer, there is an answer. We (yes, we as in me and you), as the people who've fallen in love with Mars Curiosity's delightful personality, can figure out how to deliver care that's individually appropriate on Earth. We can. I believe it.

IMG_1573.JPG

Gnome Garden - Courtesy of all my amazing friends.

11:00PM: Pass out. Smack head.
11:25PM: Pass out. Miss head.
12:00AM: Pass out. Get caught. (Rinse. Repeat. 5x. 12:30-1AM).
01:00AM: Get picked up and carried to bed. Have friend leave.
01:30AM: Have friends come back. And attempt to convince you to go to the hospital.
01:45AM: Call your friends in CA to convince your friends in DC that you don't have to go to the hospital.
02:00AM: Sleep.
04:00AM: Wake up. Go to bathroom. Pass out.
05:00AM-11:30AM: Exist in Twilight.
03:30PM: Have friend come back.
03:35PM: Have friend call his doctor friend in a thinly veiled attempt at convincing you to go to the hospital.
03:40PM: Know what he's doing and go to the hospital even though you don't think it's necessary.
04:00PM: Arrive at hospital. Have no idea what happens to the car.
04:03PM: Get escorted back to room.
04:05PM: Get hooked up to every machine.
04:10PM: Try to make deal that involves an abortion to avoid peeing in a bedpan.
04:12PM: Fail.
04:15PM: Get stuck.
04:16PM: Get stuck. Have nurse give up.
04:30PM: Get stuck.
04:32PM: Get stuck. IV Success!
05:00PM: Make jokes about tweeting at Todd Park.
07:00PM: Almost get a CT scan. Almost pass out instead.
07:45PM: Lose talking privileges in re: work.
07:55PM: Lose talking privileges in re: everything.
08:00PM: Get CT scan.
08:10PM: Try to make deal to leave hospital.
08:12PM: Fail.
08:15PM: Sit up to breathe. Get dizzy and nauseous. Almost pass out. Get caught. Be laid down.(Rinse. Repeat til 11PM).
11:00PM: Freak out.
11:02PM: Get told you’re being admitted.
11:03PM: Get morphine.
11:15PM: Agree to license the 3 M’s to a nonprofit.
11:16PM: Stereotypically outsource thinking to Indian friend.
11:17PM: Finally get that Morphine trumps Mind and Matter.
11:30PM: Get fed pringles and Gatorade. Think it’s the best thing ever.
11:45PM: Get moved to hall.
12:00AM: Fall out of wheelchair. Have friend pick you up put back into bed.
12:15AM: Get transported upstairs.
12:30AM: Get put into bed.
12:40AM: Have friends leave.
12:45AM: Get new telemetry devices and percocet.
02:00AM: Get morphine.
02:30AM: Fall asleep.
03:00AM: Get woken up by IV beeping.
03:15AM: Have nurse turn off IV noise.
03:20AM: Get woken up by IV beeping.
03:25AM: Hit IV buttons til they stop beeping.
04:00AM: IV starts beeping. Go into hallway and freak out over beeping. Almost pass out.
05:00AM: Get Ultram.
05:30AM: Sleep.
06:00AM: Get woken up for blood pressure.
06:15AM: Sleep.
07:00AM: Get woken up for blood draw.
07:15AM: Sleep.
08:00AM: Get woken up to talk to med student.
08:15AM: Sleep.
09:00AM: Get woken up by roommate’s doctors.
09:15AM: Sleep.
11:00AM: Get woken up by roommate’s visitors.
11:30AM: Have Drs and 15 med students round. Get told there’s nothing they can do.
12:00PM: Call nurse and go to bathroom.
12:05PM: Pass out. Not get caught by LVN you called. Hit head.
12:10PM: Get visited by nurse manager.
12:15PM: Puke. Start Shaking.
12:30PM: Have doctor come visit and tell nurse to give Zofran.
12:32PM: Have nurse refuse to give medication until the doctor physically writes it.
12:33PM: Have doctor promise to write script.
12:35PM: Get Zofran.
01:00PM: Get more Percocet.
02:00PM: Fall asleep.
02:30PM: Wake up because IV has blown and is leaking all over the place. Hit call button.
02:45PM: Get tired of waiting for nurse. Stop IV flow yourself.
02:50PM: Have nurse get mad because you made her replace her gloves before she replaced your IV.
02:55PM: Get stuck.
03:00PM: Get stuck. Have nurse give up and refuse to pull out infiltrated IV.
03:30PM: Have tech come to replace IV.
03:33PM: Get stuck.
03:35PM: Get stuck. It works.
04:30PM: Have nurse come back and reconnect IV. Remind them to pull out leaking IV.
05:00PM: Get dinner.
05:30PM: Puke.
05:40PM: Ask for more Meds.
06:45PM: Get more meds.
07:30PM: Exist in twilight
08:30PM: Have friend show up with Happy Meal. <3.
08:45PM: Get discharged.
09:15PM: Pass Out.
09:20PM: Get tucked into your own bed.
09:30PM: Fall Asleep. Stay Asleep. Bliss.

Alice is the most wonderful mentee ever.

Alice is the most wonderful mentee ever.

What's wrong with this picture?

One of these things is not like the other.

Hint: The IV isn't supposed to be there.

So this morning I had a loop recorder put in my chest to watch my heart rate. The procedure went well.
I was super impressed by the pre-op team. One nurse in particular was really good- she was all about people checking my ID band and made sure the antibiotics got started on time. The PACU, not so much. Somehow the IV never got removed before I was discharged. They called 2 hours later to see if the IV was still in my arm. It is.

If I were to ask the why questions:

- why was the IV left in?
Because the patient was dressed and we didn't see it
- why was the pt dressed?
Because they were d/c quickly
- why was the pt d/c quickly?
Because they were freaking out
- why was the pt freaking out?
Because the drugs used weren't right and they were alone

This ain't so bad.

This ain't so bad.

Drugs:

- why weren't the drugs not right?
Because we didn't know the last time the pt had surgery she got anxious
- why didnt we know that?
because the patient didn't realize there was a correlation.
- Why didn't we fix the drugs?
Because their oxygen was low
-why was the oxygen low?
Because the drugs weren't right
-why didn't we fix the drugs?
we cant dc people if we give them more drugs
- why did they have to be dc?
Because they were anxious... And we needed the bed.

Friend:

- why wasn't the friend there?
Because we didn't call them
- why didn't we call them?
We didn't know we had to
- why didn't we know we had to
We didn't notice the note on the chart

Pretty sure a checklist would have fixed this problem.

“Are your eyes closed?”
“No”
“Yes they are. Jess, why do you lie? It scares me when you lie.”
…“Wait, what?”
“You’re going to fall.”

And, like clockwork, I fall, semiconscious to the sidewalk on the corner of Pennsylvania and Constitution.

Somewhere above me someone is concerned. “Is she ok?” “Yes” “No, really, is she ok?” “Yes, she has a heart problem.” “Really? Is she ok?” “Yes, I’ve got this.” “You’re sure?” “I’m sure.” Yes, lady, he has this. He always has it. No matter how embarrassed he is. No matter how inconvenienced he is. He has this.

So, what’s wrong with me? Postural Orthostatic Tachycardia Syndrome. POTS. What’s that mean? It means that sometimes when I stand, my heart rate doubles, my blood pressure drops, and I pass out.

Apparently most people grow out of this. But I’m not most people. I’m 25. I’ve had POTS since, if I’m honest, I was about 9. When I finally got it diagnosed at 21, my condition became legitimate. I’ve seen the statistics; the odds that this goes away after fifteen years are almost nonexistent. I won’t die, but sometimes I’ll want to. As my cardiologist put it, “I’m [his] problem.” I’m the one he can’t fix. But that makes sense. I have an idiopathic condition. It lies somewhere between the heart, autonomic nervous system, and mind. It’s a veritable no-mans land of drugs and specialists where there’s no cure and very little understanding.

During my last “bad” episode, my friend called to check up on me: “Jess, if they make you go to the hospital I’m not going to fight them. Plus, isn’t that what you do?” No, that isn’t what I do. Yes, I have a degree in Health Systems Administration. Yes, I’m an “expert” on Health Information Technology. But that doesn’t change the fact that I’m a horrible patient. That I carry my medical records around with me in a hot pink binder. That I hate hospitals.

And I always have. If I had my way, I’d keep everyone out of them. It’s why I “do” health IT. See, I’ve been in lots of hospitals - from community hospitals to major academic medical centers. They're filled with well intentioned, highly trained, people. Unfortunately the mechanisms these care facilities have put in place don't actually connect the people within, let alone between, instances of care.

I used to think I’d trade anything for perfect health. Now, I don’t know if I would. See, I’m happy. I have people. I have a future. And I know that my life has been influenced by my sickness. Without it, I wouldn’t understand. I wouldn’t understand powerlessness. I wouldn’t understand frustration. I wouldn’t understand that the system is broken.

How broken?  During one stay, despite my credentials, I ended up semiconscious at the bottom of a flight of stairs, in tears, begging to go home. See, in the moments I’m a patient, I can’t manage my life. And, despite their credentials (on this visit: a MD/MBA, a MPH, and three MHSAs), my friends can’t manage it for me. Can you imagine someone without this support system navigating the bureaucracy that is healthcare? I don't know how they do it.

Luckily this is only one side of my coin— I’m healthy enough to have a day job advising the people that chart the course of American health policy. The philosopher Herodotus got it right: “the greater the man, the greater the misfortune,” or, as our friend Peter Parker put it “with great power comes great responsibility.” I know that the weaker I get, the stronger I become. The weaker I get, the more I understand that my care continuum isn't the only one with flaws. The weaker I get, the more I understand that together, we can change our health system. That the whole is greater than the sum of its parts.

Back under the glow of the US Capitol, I hear my friend:

“Jess, you’re broken. But I’m broken too. We’re all broken.”
“You think that together we make a whole person?”
“Yeah, Jess, together we’re a whole person.”

And with that, he picks me up. And carries me home.

http://i2.wp.com/mw2.google.com/mw-panoramio/photos/medium/56925708.jpg?w=630

This is the story behind my Walking Gallery Jacket: "Is She Alright"

8197658371_d50573660a

Back Camera

I had been sick for about a week. My heart rate was high, my fever was up. I wasn't happy. So about 9 pm I called Phil and asked him to take me to the hospital. On the way over to our regular haunt, I asked him to redirect to the local "rich person hospital" because the line's always so long where we're regulars.

So glad we changed directions! It was amazing. I got there and Phil took me in. By the time he parked the car I had a bed in the ER. Within 20 minutes I had had my blood work, chest xray, head CT, and was waiting for results. I was in a room instead of a hallway. I had TV. Phil and I were watching football (figured the guy deserved it).

Eventually they came back and said nothing was wrong with me and I could go, Phil pushed back and the Dr. said she'd admit me. It took about two hours to get admitted, much shorter than any other admitting process I've ever been through.

A doctor came and took some stats and I got an Rx for what amounted to Nyquil and water. Eventually I got upstairs. During transport I got to see some pretty cool glittery tiles they have on their hallway ceilings.

Once I was on the floor I had a chance to sleep. I woke up at about 4am because I couldn't breathe. They gave me some drugs and back to sleep I went. At about 6 I woke up again because my arm hurt. It was huge, obviously my vein had blown and the fluid was filling up my arm. I hit the call button but no one came to fix it so I stopped the flow and tried to go back to sleep (but didn't). An hour or so later a nurse said she'd pull it out, but forgot. Wasn't too worried, now that the flow was off, it didn't matter too too much and eventually the fluid would disperse.

Eventually the doctor came to see me - he noticed my labs showed I had an infection (for me that could trigger this kind of episode) and pulled out the IV. Couple of days on antibiotics later, I was ok and on my way to CA.

I find it a bit ridiculous that my "best" hospital experience was one where it took them 3 hours to pull out a busted IV. What I find even more ridiculous was I had been in a primary care clinic three days before (I'll forgive the ER oversight since they eventually figured it out...). All they had to do was run a simple test and it would have saved me three days of being totally floored and a trip to the ER. A simple oversight cost the health system thousands of dollars. But that's a rant for another day.

But like seriously, my arm...

Broken Femur

As previously stated, holidays with me are never dull. New Years was no exception. It started off quietly enough- a lil church, a lil skiing, but all hell broke loose eleven hours and twenty three minutes into the new year. I was skiing along nicely when suddenly a snowboarder hit me. I tried to carve to the right but to no avail- I ran smack dab into the middle of a HUGE tree.


The Tree.

 


The Kid. His name is Sam, how ironic.

 

If I hadn’t been wearing my helmet I’d be dead, as my eye attests to, and as it turns out I comminuted my femur- that means it's broken in so many places they stop counting.

After the ski-patrol guy determined that I wasn’t faking the pain and couldn’t ski to the bottom of the hill they put me in a ‘scoop’ backboard which means that they assembled it around me in a snow bank since they couldn’t move my leg from its bent position. They had to pick me up three times, and let me tell you I screamed bloody murder each time. I finally got to the bottom of the hill where they cut off my five-day-old-686-snowboarding pants, gave me some morphine and straightened out my bent leg. Let me tell you, it is exactly like the movies-bone popping, screaming, and really hot ski patrollers 😉


My eye. Before it turned black.

 


Inside the snow-mo.

After enduring a hour ride to the nearest hospital, ten hours in ER, two catheters, ruination of my supergirl stuff, breakage of my camera, and really unresponsive nurses- they finally operated. 4 am and I had a brand-new-titanium-filled-femur.

Broken Femur

A lil break...


Rod and screws


My Butt. Well Thigh. But really close to my butt.


My Knee.

But my story isn’t over yet. According to my doctor breaking your femur is the most painful thing you can possibly do. Additionally, as each femur is responsible for 20% of the hemoglobin in your blood, I was in trouble. At least all those donations paid off. What didn’t pay off was the nursing staff in a small Podunk town- the nurse who gave me my transfusion had a MPH but didn’t wash his hands after touching blood and checked my pulse with his thumb. I thought he was going to kill me- which his counterparts had almost done by not reading my allergy bracelet making me swell up to Pumpkin Size


Looks like cool-aid!


A-. Thank you very much.

Thankfully he didn't kill me, and I finally got my fever down under 100 on Friday and got to go home. The only thing left is to finish up the anti-blood-clotting shots I have to give myself

A shot.


Ouch!

Oh, and if you ever end up in the hospital don’t eat the food- it’ll kill you.

The Food, Sam, Me, and a Black-Eye

I might not get to come back in the spring- how sad would that be? But at least I'll have company my sister's boyfriend just broke his femur today- six days after I broke mine- what are the odds? I really appreciate all the phone calls, comments, and cards- they make me feel super!